Liverpool care pathway

[stella1w]

Posting here for traffic, not debate,
distraught friend just told her mum, demented, at home with 24 hour care has been put on liverpool care pathway. She spoke to the gp about palliative care thinking it would mean a nursing home and was not consulted about lcp. Gp is refused to let her mum have sedatives or water and my friend is v v v upset and feels this is like euthanasia. She doesn,t seem to know what to do or if she has any rights to stop it. It could take four weeks.
I said if she had doubts she should ask for lcp to be postponed until the children had been consulted and undertood and consented.
What can she do?

Not hiding behind patient confidentiality at all claig. I hate it when people say that because its such a bullshit response. If you were a HCP you would know we would lose our jobs on the spot if we commented publicly on an individual case that we were involved in.

Anyway, I'm off this thread. While I've been working helping the Trust earn money by hastening death, I've neglected my housework.

'And with regards Mrs Greenwood, when are the NMC and GMC disciplinary hearings due to be held?'

My guess is probably not quick enough.

Pieces, I don't know who is on the pathway at your hospital. I just hope that you give them water when they need it.

I am not an expert on fluids, but from what MP MNorman Lamb said, it seems that water has been withdrawn from people who are compos mentis and he found that disturbing. That is what disturbs me, why doesn't it disturb a nurse like you too>

'If you were a HCP you would know we would lose our jobs on the spot if we commented publicly on an individual case that we were involved in.'

Why is that? Probably due to the legal apsect and teh fact that what you said might jepoardise teh Trust's defence. It's more likely to be to protect teh Trsut than protect the patients.

My mum died last May in a Care Home, she'd only been there a month after weeks in hospital.
She was doubly incontinent, had dementia, and had stopped walking on her zimmer, she just gave up trying to move at all.
She had a urine infection then a lung infection and was being treated by antibiotics.
She was refusing to eat (she was six stone) and was being given water which the staff had to sit her up to take.
She died in peace in her sleep, if we'd been offered the LPC, even though it would have been the hardest decision I'd ever have had to make, I would have said yes.
I know she was ready to go too, and I know she's now at peace, and not this husk of a human being being forced to live because of some misguided 'love' on our (the families) part.

My mum was on the LCP 6 years ago - she had terminal ovarian cancer. She declined very quickly after being admitted for bilateral kidney infections - the one dose of chemotherapy she have sent her into renal failure.

As she began to lose consciousness we agreed with the medical staff to use the LCP. Iv fluids were removed when her insitu cannula failed and actually this was a relief. Watching the staff desperately trying to find a viable vein in her poor body was tortuous - there literally wasn't any way to administer one anywhere. It meant no more futile prodding and poking

The LCP in our case gave my dear mum a better quality of life at the end, she had her care needs met and seemed to be painfree at last. She quietly slipped away one evening, the end of a bloody awful 4 months.

The LCP is a pathway - and pathways are really only as good as the people administering them. My mum was very clearly at the end so there was little doubt about any chance of recovery. The staff were truly marvelous and gave us the space and time to say our goodbyes.

I hope in the review they include some positive stories as well. The positive ones never do make it into the spotlight.

Good, though sad of course, to hear of your experiences LBE and colley.

I think they add a much needed perspective. You're right colley that the positive stories never do make the spot-light.

I wonder if it is more difficult deciding when the end is the end in older patients?

My mum was young when she was diagnosed (50) and went from a vibrant woman to end stage very rapidly. Her diagnosis was clear and her prognosis was very poor after the results of her first op and far worse after her second.

Without wishing to be flippant it isn't something you announce in the paper - mother of Colleys died peacefully in her sleep on the LCP after a short illness!

I'm so sorry you lost your Mum so early Colley

Actually I agree claig about dnr but from a different position - my grandfather was given resuscitation whilst under a DNR. The nurse was a 1-1 didn't know his resus status and they only stopped when a family member started shouting at the team.

Bloody awful situation which should never have occurred.

Thanks juggling bloody bastard disease cancer.

My grandfather was DNR after being diagnosed with AML and when I saw it on his notes I was horrified. After asking my mum if this was something she and my Nan had agreed they said they'd never been consulted. I was fuming, he died shortly afterwards, slipped away peacefully - I'm so glad he was not for resus as are the rest of the family.

Why is a DNR a 'quasi death sentence' Claig?
Do you actually understand what that order means?
It doesn't mean actively kill a patient or stop treating a patient. It means in the event of the patient dying (most likely from the disease or illness they are suffering from ) then no attempt should be made to try and bring them back,
Resus does not cure the illness that caused their death or make them better. If they survive at all, which if you look at the percentages of successful resuscitation is actually quite low, then you have bought them back to continue to suffer from whatever illness they had, with a few broken ribs thrown in, multiple needles jabbed into them and the possibility of brain damage.
The only time it is likely to be successful is when the condition that caused the arrest is a treatable one, ie due to abnormal heart rhythmn that can be shocked or loss of fluids which can be replaced (for example in shock or bleeding)
As for the case you highlighted, the woman in question had terminal lung cancer and a broken neck? If she passed away from this illness it is the humane thing to do not to jump on her chest and try bring her back to suffer a bit longer.
I understand families find it hard to let go of loved ones, that is why a DNR order is a medical decision, as they fully understand the consequences of attempting it and have no emotional attachment which may cloud their decision.
But family and patients should always be aware that the order exists and the reasons for it.

It is about accountability. Doctors and the NHS should be accountable to the patients. We can't have secretive decisions about putting people on DNRs and LCPs which can mean the end of people's lives without gaining patient and family consent.

One day it will all change. The DNR looks like it is already being challenged under European Human Rights Law. Eventually the system will be overhauled and accountability to patients and families will be enforced.

Claig, people die of illness and disease, mostly stuff that isn't treatable and nothing you could do would save them.

What exactly is the point of attempting resuscitation in these cases?

Are you saying that we should attempt CPR on every patient who dies irrespective of the reason that caused their death?

In my case the dnr was discussed with immediate family and a decision made jointly - not an easy one. This was now some time ago but we did make a complaint at the time - mainly around the point that there was little reason for asking consent for a dnr if it was going to be disregarded and staff assigned to a specific patient should know something so critical.

However I do acknowledge that in the heat of the moment the inclination would be to resus if there was any uncertainty.

I disagree, sometimes the family aren't in a position to make an appropriate decision. If I had been asked by the medical team whether I would be in agreement with DNR I would have for my grandfather I would have said 100% not, I want EVERYTHING done for him, EVERYTHING! Entirely inappropriate.

Yes I think you are there to save lives and should try your best to do that and that includes resuscitation for people who have gone into cardiac arrest for whatever reason.

'people die of illness and disease'
yes, but when people are in hospital, they don't expect to have secret notes written into their notes which say do not resuscitate this person if they have a heart attack.

On how many people is resuscitation tried in the NHS per year and what percentage is successful?

If the arrest is witnessed then approximately 22% survive
If the arrest is not witnessed ie you come across a patient already in arrest then the survival is approx 1%
If totally depends on what caused them to die in the first place, if its due to their organs shutting down due to their illness then no amount of CPR will fix that.these are the cases that DR's will call DNR on, as its futile. CPR is not a treatment.
If its due to a sudden abnormal heart rhythm then threres a chance that a shock delivered soon enough can reverse that.

So people should be resuscitated even if that's not in the best interest of the patient? Either because they have specified they dont want it or their condition is such whereby they will die anyway and have no quality of life?

en.wikipedia.org/wiki/Cardiopulmonary_resuscitation#Effectiveness

gtg pick up relative, but maybe read that to get a better idea of what CPR actually is.

I think it is dangerous to give medical staff the power to make life and death decisions without consulting patients and families, I think it changes the whole doctor-patient relationship and can lead to a breakdown in trust of teh system which is paid for by the patient.

My guess is that legal challenges against an informal DNR system may well be upheld and then a more formalised system will need to be introduced eventually. It is about patient rights and doctors being there to treat patients and do their utmost to save their lives.

Sirzy, I said that the patient and/or family should give consent. It should not be done in secret without their consent.

claig says "Yes, you are there to save lives"

Well, I think HCP's are there to provide holistic care from birth through to and including death to the patient (or substitute other word !) and their families.

So, not always to "save lives" though this can often be the case.

I think this area has changed so much. My grandfather died in 1992, I was a second year student nurse and like I said earlier in my post his DNR was done without consulting the family - for us thank goodness!

20 years later I've just finished my Return to Practice course and there are now much stricter criteria relating to DNR, in our trust it cannot be done without family involvement, there are "ceilings of care" that can be used to expand on a DNR notice and of course the LCP to be used where appropriate - again in our trust not without family involvement. I thought I was all done with so much more dignity and empathy than when I left (and also soooooooo much more paperwork!)